Is anyone recovering from brain surgery related to hemangioblastoma?

Posted by philthomas @philthomas, Mon, Feb 18 8:28am

I consider myself lucky, but I’m disabled. I’m 64 and had the surgery on 7/3/18. The surgeon just knew it was cancer, but it turned out that I’m in the 1% in which it was a mass of blood cells and not heritary. It was a walnut sized tumor and the surgeon, who I can’t say enough good about, said he had never had a 9 hour surgery that took 2 units of blood. It was between my cerebellum and spinal column and he had to take at least 20% of my cerebellum to cauterize the blood vessels. I have full use of my left side, but my right side (I am right handed) is similar to a stroke. It is weak, but everything else is intact including the rest of my brain. It has slowly rerouted and I drive carefully locally (I live in Tampa) but I have a long way to go. I do go to the gym now and it is really good for me. So far I lost 20 of the 25 lbs I needed to, and everything is two handed which is good. I feel almost normal when I work out. My balance is better, and I walk almost straight now, but I put myself at 65-70%. Things are better, but the operative word is slowly. I used to use a walker, I couldn’t go up stairs, things tasted “hot” and I was sorta dizzy all the time. Now it’s much better. The one thing that hasn’t gotten much better is my ability to write with my right hand. It still tremors and I don’t know whether to go left handed (this is typed with my left hand) or keep trying with my right hand.

Is there anyone out there who had similar issues? I’d love to talk. It’s really hard to find someone in the US who has had the same thing I’ve had, but I would like to meet someone who’s had similar issues. I’m ok and the surgeon says I’ll live as long as before, but I accept my disability a lot better than my wife.

Liked by mrector

@philthomas I have not endured the same events as you have; I do, however, have trembling more noticeably in my right (dominate) hand since being put on immunosuppressants. It comes and goes and I have less now than I did immediately following transplant surgery. I believe mine is directly associated with my medications. I suggest working on improving your right hand use is mostly up to you. If you miss it and just cannot pick up using the left hand, keep working on it. If you want to begin working on both, do that. Considering your age, you might feel like me . . . I am old enough, tired enough, and have accomplished enough in my lifetime that some things just are not worth fighting for. When my tremor is bad I brace my wrist as firmly as possible and write as slowly and clearly as possible. Some writing is better than other. I look at writing as an artistic endeavor and that keeps me practicing. It helps that you are accepting of the changes in your physical being. I suspect part of your wife's response is that your future has been drastically changed from what she (and you) expected it to be. I believe you, like me, will determine which battles to fight and which to take a pass on. Whatever you feel like at the time is okay. I wonder if you might benefit from journaling a minimum of 2 minutes a day. One minute with each hand. You can get some thoughts down, practice ways of making your writing legible and see how things progress. After a few weeks you will probably be able to see and feel a change Good luck and blessings to you. You and your wife will remain in my prayers.

Liked by mrector

Hi @philthomas and welcome to Connect. You'll notice that I moved this discussion to the Brain Tumor group. I encourage you to browse the discussions in the brain tumor group I think you'll find others with similar experiences if not exactly hemangioblastoma. For example, you may also wish to join this conversation:

> Life after Brain surgery

What you describe sounds very much like stroke recovery. It also sounds like you've come a long way. I agree with @2011panc, acceptance takes time. Your wife may need longer. It might help to focus on what you can do now that only a few months ago you couldn't. Working out must help a lot physically, but obviously it has been good for you mentally too. Did you ever go to stroke rehabilitation sessions?

Liked by mrector

I had a meningeoma removed 08/28/18. I go to my next check-up on March 4th. I am anxious for this appointment because I am having hand tremors in both hands since surgery and some other symptoms I want to discuss with my neurosurgeon. I'm wondering if the hand tremors will eventually go away or if it's something I just have to accept as normal. This is completely life changing but I'm thankful to be here.

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